Can You Hear Me Now?

I decided to re-activate my blog one day before a FULL year had passed without writing something. You’re welcome.

This has been… without question… the worst year of my life. Especially the past few months. I don’t even know where to begin!! HOLY SHIT.

When I last left you, I had just hired Chrissy, and Thalia lived upstairs and all was well in the caregiver area. Now, Thalia has moved (waaaah! She still comes, but it’s NOT the same as having someone upstairs) and Chrissy left in May to spend the summer in Thailand and then move to Ontario. She was a GREAT asset this past year, but she’s gone. So, I hired this chick named Sherri who seemed very cool and although red flags popped up all over the place, I chose to ignore them because she actually worked great with me, and I’m an idiot. So I should not have been surprised when during one of my several recent hospital visits she texted me that she was stuck in BC because of the rain, and would let me know when she was on her way. I know one highway was closed for one night, but it wasn’t the only way out, and when I got home, couldn’t reach her by any of the numbers I had for her and she chose not to show up for work or call until 4 days had passed, I sorta knew that was over. Thankfully Thalia was able to cover for her. But when she finally called and acted like nothing was wrong, I informed her she was being replaced and her final cheque was in the mail. *shiver*

She has yet to be replaced… I’m waiting on a lady nearby I’m 99.9% sure I want to hire, but she needs another week or so. And since my hospital visits resulted in my being on an indwelling foley catheter for a few weeks instead of doing the in/out thing, I called Nancy and asked her if she could fill in for a couple weeks. Luckily she is able to. So Nancy is back for the time being.

My bladder and everything to do with it has been a living hell for the longest time now. Last year I started the in/out catheter thing several times/day so my bladder could be properly emptied. But I still got frequent UTIs and have been on and off every antibiotic known to man (yes, I take D-Mannose and natural stuff… more now than ever). After several visits to a uro-gynocologist and tests and whatever I needed to do, I finally went for Botox on May 9. Now, what Botox in patients with MS related neurogenic bladders is supposed to do, is relax your bladder so you don’t get the urge to pee constantly and your bladder is able to hold more before you feel the urge to go. In me, however, NOTHING EVER WORKS LIKE IT’S SUPPOSED TO, so I ended up with an antibiotic resistant UTI, a constant urge to pee and completely unable to, calling Thalia at 2:00 in the fucking morning to cath me because I had to go SO BAD and couldn’t, hospital visits, and finally now an indwelling catheter. At least the botox has relaxed my bladder enough that I can wear the catheter without getting painful spasms. I don’t know how long it will stay in… I actually want to keep it until the botox wears off and then get a permanent Supra-Pubic catheter put in (it goes right into your bladder via a surgery because a foley will be too painful then) because I GIVE UP. I HAVE HAD IT. My bladder has caused me too much pain, tears and exhaustion over the past couple of years. I’d rather be attached to a bag of pee. I don’t fucking care. It’s just too hard. Plus, with the catheter I’m able to drink more, and past supper, and try home remedies for UTIs I’ve read about, and my urine has never been so clear.

I could go on and on about my health. MS SUCKS. It’s a rotten battle you cannot win and fighting is so hard. I have gone from being able to walk up the hall and back to not even being able to do that in the past year. I stay in bed until home care comes in the morning (don’t even get me started on home care!!) and can get me out of bed and wheel me out here. I’ve gone from showering every day, to 3 times/week because it’s so hard, and I’m going through the paperwork process to get a lift installed in my bathroom to get me out of the shower. It is just too hard now… standing up is the HARDEST thing I do, and needing to do it after a shower without my leg brace on, when I’m cold and wet is near impossible. I’m sort of doing an up-pivot-into wheelchair thing from the shower bench with my home care worker’s help, but it’s getting harder and scarier every time. At bedtime I try to walk to my bed with my brace still on, but often I can’t do it and out comes the wheelchair.

I can’t get around my apartment AT ALL… I mean, it’s been a long time since I really could, but it wasn’t that long ago that I could still grab something from the fridge or cupboard if I HAD to. Like, if a chocolate craving hit and I knew I had Reese’s Peanut Butter cups on the freezer door. Now I can’t even do that… no secrets here.

I’m so fat. I can’t move, (although I still do Range of Motion with home care every morning and use my Chi Machine for 30 minutes every evening) so everything I eat sticks to me. And I’ve always had a weight problem. I don’t eat nearly as much crap as I used to, but I’m bigger than ever. God. I remember going through my 2010 receipts and seeing pizza, pizza, pizza, KFC, crap crap crap allll the time, when I was more independent and ordered in a lot. I can’t eat like that now… I mean, someone has to get the door and accept the delivery so I’d be ASHAMED and embarrassed to do that so often now (ever had food issues or an eating disorder? I know you get me). I’ve had the same chocolate bars in my freezer for months ’cause I’m afraid to ask for one. I can’t get them, and I know my caregivers would give them to me, because who the Fuck can say no to someone in my position, but goddammit. My life sucks so bad that eating crap is one of the few joys I have left. But being this fat when moving is so damn hard isn’t good, either. Having food issues and believing eating crap is a “joy” is only one of my problems, and I’ve had it longer than MS, but ohhhhh how it complicates things now.

I WANT A DO OVER.

I’m going to just upload this. I’m too tired to keep typing. Still one-handed, still no Frogpad’s being made for people like me. I still have my gorgeous kitties Pita and Pepper and will upload photos next time. My lovely friend Emma was in town last month and I got to see her, too. And Peter Katz. And my Polyboys. It’s not like there hasn’t been ANY good this past year. My brother even got married! But today was about just SOME of the bad and I need an outlet. So I need to get this blog up and running again. TTYL.

Damn Canada Post! I want my stuff from eBay. Who knows when I’ll see it? And I can’t even mail anything because the mailboxes are locked up and “out of service”. I hate strikes/work lockouts. Work it out, people!

It’s Father’s Day so I won’t get this posted before everyone gets here, but I’ll get started anyway. It’s the whole family at Donna’s again where we’ll order in food and everyone can watch me get up and down to pee a million times in the commode beside my chair. I have NO MODESTY anymore. I’ve been saying that for awhile, but it’s never been more true this past year or so. Everyone has witnessed me pee. I wish I could be discreet about it, but I can’t. It’s just the way it is. And last Sunday night I fell in my bedroom around 12:30 am and since I sleep in the nude, (I always have and now I pretty much need to anyway) my rescuers (Thalia, who always sees me naked, and her husband…) saw me in my full glory. It was not easy getting me up, and although Thalia tried to keep a sheet wrapped around me for modesty’s sake, it was just in the way.

I am so thankful Thalia lives right upstairs and I wish she and her family would stay forever. I think I’ve got a year - they signed a lease - but then they’re outta here and most likely moving to Toronto. Wahhhh!!!

I am wearing a dress today that I ordered off eBay. It’s the first time I’ve worn it and it’s so low cut it shows the lace of my bra a little too well. Appropriate for Father’s Day, no? I have 3 dresses on the way… since I can’t wear pants around the house anymore I’m stocking up on comfy toss-on dresses for the summer. A little more classy than just a shirt! But this dress is a meant for a night out, methinks. Oh well. Damn postal strike.

I hired a new caregiver last week, named Chrissy. She’s fabulous! She works most mornings at a long term care facility and then 3 days a week she comes here for the afternoon (and 2 bedtimes/week). It’s going great so far. I had to replace Nancy because I need to be given an in/out catheter a couple times/day and she wasn’t comfortable with that assignment. So while I was at it I juggled the hours to give Thalia a few more (Nancy used to come 4 days/week).

Oh, the first of family arrived, I’ll be back later!

Obviously, I didn’t make it “back later”. Family was here the rest of the day and I’ve rarely been alone since, as my life revolves around caregivers. And my bladder, as I have mentioned previously (in passing).

I’m still waiting for that doctor in California to get back to me. He has copies of all before and after images/reports of my veins and on Monday he emailed me that he has everything he needs and would “try to call tomorrow”. Still waiting. Not that it will make any difference. He can’t fix my CCSVI from there and they won’t do it for free, and I’m still in debt from my last treatment, and whose to say I wouldn’t be worse again after another attempt?? Sigh.

Have you seen this yet??

Awesome. All support is appreciated.

What really bothers me, aside from the fact that I know I have CCSVI and can’t seem to get it treated properly, is that when you read about the symptoms of a stroke, or hypoxia (lack of oxygen to the brain), I have ALL those things every day, yet I can’t get help for it. Dr. Code says we are suffering from a slow stroke, and it makes perfect sense. It’s all related to blood flow and treated by correcting the blood flow. BUT IF YOU HAVE MULTIPLE SCLEROSIS THEY WON’T TOUCH YOU. This country, and the ones with “universal health care” that are run by pharmaceutical companies who make billions as long as MS stays an autoimmune disease (never proven), and with big ego’d neurologists who refuse to look at other theories because they also have strong financial ties to big pharma, are fucked. We are just fucked. It pisses me off like you would not believe.

I’ve had another week with Chrissy, and I tell ya, she’s just great. Next week we’ll be going out more and I’m planning on taking a road trip out to see my buddies in Carstairs at the Cafe Radio. I’ve only been in her car twice for outings, but it went well. And this week we went for a long walk (wheel) that I hope to do more often in the summer. It involved Starbucks.

Ohhhh we cleaned out my office this week, I got rid of a lot of old paperwork I’m tired of hanging onto. It’s old stuff from 2006 and 2007 from clients I haven’t heard from in years, and I figured, I am not going to be responsible for it anymore. Tax laws say you need to hang on to receipts for 7 years… but I don’t even know how to find these people anymore and they never requested this stuff back, so, I filed it under “G”. Scratch another thing off my 101 list.

I’m going to see the Titanic exhibition at our Science Centre on Sunday! It was Shawna’s idea, and I think it’s a good one. They have original pieces from the Titanic and stories and stuff. I think it’s going to be interesting. I didn’t realize they’ve been here since February and the exhibit ends on Tuesday! Glad I get to go.

Hehe I’m listening to a live feed from Cafe Radio in the background and my friend Kim just said “hi” to me. I almost feel like I’m there.

Well, I’m going to post this before another week goes by. Gotta pee!

Today I’m going to talk about my trip to southern California (no, I don’t have a different keyboard, but I’m too anal to keep typing with no caps so I’m going to do it sometimes. SOMETIMES). It was a fun trip and deserves some talkin’. And photos, but I haven’t even sorted/edited them all yet…

We (Shawna and I) arrived in Los Angeles at 1:00 in LAX on Sunday, February 27, the same day as the Academy Awards. Because of this, I am 99.9% sure they re-routed the “normal” people to buses to be brought in to a different gate. Or something. It was not a normal plane departure and this is a daily flight, so on other days you know it’s different. In fact, we saw that same flight arrive when we were leaving, so it was obvious to us. Re-route the little people.

Anyway, we arrived, caught an Enterprise bus to take us to the car rental place, and I sat outside in the nice sunny weather while Shawna went to get the van. It took a loooong time. At one point a guy came along and said “here, let me wheel you inside, it’s COLD out here!” I had to laugh. I guess the week we were there was “cold” to Californians but to us, it was nice spring weather (usually around 18-21° C and sunny). But I let him take me inside so I could watch some red carpet action.

Finally Shawna and the van were ready, so we headed for the freeway and Costa Mesa, less than an hour away. We stopped for supper and then checked into our room at the Ayres hotel. It was great except for the TV. It was in a cupboard facing Shawna’s sofabed, and could not be turned so I could see it. Plus the cupboard doors didn’t even stay open. So I got to HEAR the Oscars that night. It was pretty neat to know all that was happening so close to us.

The next morning we had a quick breakfast in the restaurant (awesome free breakfast buffet every morning) before my consultation with Dr. Arata at Pacific Interventionalists. I met Mark, a Facebook friend from Edmonton who was being treated the next day as well. Dr. Arata was very nice and professional, knows his stuff, etc. What did we do after that?? I don’t even remember. Oh wait, we went to the MALL. Of course! South Coast Plaza. The largest mall in California. Pretty incredible place, with all the big names you can imagine. Then I dragged Shawna to a Whole Foods to make her cry over all the gluten free stuff you can get in the States that you can’t get here.

By the way, our dollar was really good while we were there, and eating out and everything was cheaper than I expected! Also, since everyone is on some kind of special diet in CA, getting gluten free food in restaurants was a breeze and wheelchair accessibility was never really an issue. I want to live there.

The next morning was my procedure. We got to the clinic and I won’t go into details (it took several nurses and many painful pokes before they finally sent someone who would LISTEN TO ME about where the good IV vein is, the procedure itself was bloody painful and at one point I screamed and started shaking/crying until they drugged me enough to put me out) and while I was in the OR, Shawna took herself to the beach and spent a few hours cruising around there. I’m not sure how long I was at the clinic, but after 2 hours in recovery they sent me home (I was awake and coherent, able to pee, so good to go). I spent the rest of the day/evening resting in bed and I do believe we had In ‘n Out Burger for supper that night

The next morning, Wednesday, was my follow up with Dr. Arata. I didn’t feel any different. (Mark, on the other hand, was an entirely new person, able to walk without his cane, no headaches, and except for some numbness in his toes, had no signs of MS anymore. Sigh). Because I had a stent put in my azygos vein I was prescribed blood thinners for two months, told to take Ibuprofen for the tenderness in my neck, and “give it time”. So… the medical part of the trip was over, now for some fun!

The day after treatment you’re supposed to lay low and not be too active (not hard for me these days, anyway) and stay “in the area” so we weren’t checking out of the Ayres until the following morning. But that didn’t mean we couldn’t spend the day in HOLLYWOOD! So, we did. We did the whole touristy Hollywood Blvd. thing, walk of fame, Mann’s Chinese Theatre, saw the Kodak Theatre where the Oscars had just been a few days before, etc. etc. Then we got suckered into a tour of the star’s homes, but because the tour buses aren’t accessible we got talked into a private limo tour. What the hell, how many times in life does one get to do this? So we went out for a couple hours in a limo with a private tour guide and saw everyone’s houses (from Johnny Depp, Ellen and Portia, Jen and Brad’s house before they split, to the Playboy mansion’s grounds and Aaron Spelling, Christina Aguilera and many more) and realized how close together everyone actually lives; Sunset Strip, Rodeo Drive, all that Hollywood stuff. It was fun and interesting, our guide knew her stuff, and a lot of history.

The next morning we checked out of the hotel and headed for Beverly Hills, 90210, where I booked us a few nights at the 5 star luxury hotel L’Ermitage (a favourite of celebrities like Leo DiCaprio, Shawna’s fave) which was, in hindsight, a mistake. The location was great, but the room was not set up for me AT ALL, and staying there was a struggle. Plus it is SO private (which is why celebs like it!) you wouldn’t be able to catch sight of a celeb if you wanted to (and we wanted to ) Only worth the money (and I got a great deal, but still, we could have stayed at a hotel in West Hollywood and been happier for less) if you’re able bodied, and spending a lot of time in the hotel.

Anyway, we got to the hotel, checked in, got a special key to the parkade because I’m in a wheelchair and couldn’t use their valet service at the curbed front entrance (saved on tips there, thank goodness), had a wonderful glass of complimentary lemonade (it was ridiculously delicious) then headed out to Burbank and Warner Bros. Studios for our tour.

We arrived at the parking lot for the tour, and I spotted a wheelchair sign and a ramp, so we parked close to that and headed towards it. There were a ton of people on this big outdoor patio and a band playing. We didn’t know where to go, so I asked some people where the studio tour was, and it was pointed out to us that we were at a private Warner Music party and the studio and tour was in a completely different place. Oops.

So we headed towards the big Bugs Bunny statue and the proper building to check in for the tour. After watching a short movie about the history of Warner Bros., everyone was loaded into the little tour bus (and me onto the back wheelchair thingy) and off we went. That was super fun and interesting! But because of the time, which I planned so carefully to be when Ellen was taping so we could maybe get a glimpse of her, or be a part of her pranks as she often does them on the lot, we were unable to go by her studio because she was taping. Harumph. We did see her office building and parking stall, but of course it was during a time our cameras were locked away. Due to copywrite concerns our cameras were taken at certain points. Like… we were able to SEE Clint Eastwood as he was directing his J. Edgar Hoover movie (missed Leo DiCaprio by 5 minutes) but no photos allowed. Or the museum where you can see the actual clothes worn by the stars of certain movies (Tom Cruise is super short; I mean, shorter and smaller than you can imagine. And Ellen Page must be the skinniest woman on planet earth). Or the set of “Chuck”. I did manage to get a few photos that day that have been uploaded to Facebook. The public album link, for now, is RIGHT HERE.

After the tour and gift shop purchases (Ellen T-shirt, Two and a Half Men coffee mug and Central Perk coffee-to-go container) we went to the Hard Rock Cafe in Universal Studios for supper. That is a pretty cool place!

By the next day, I was starting to fade. All the activity and not being able to sleep was catching up with me. I think all we did was visit Sprinkles Cupcakes in Beverly Hills for the MOST AMAZING CUPCAKES EVER, drive around a bit, and decide on which apparently celebrity hotspot restaurant we should go to for a fancy dinner. One big night out in Beverly Hills; you only live once! We ended up at Morten’s Steakhouse where there were a million Sherri Shepherd lookalikes and a private dining area in the back where the celebs probably go. Next time I will do more research and read more gossip rags before deciding where to eat! But I think there are celebs around you all the time in that town but you just can’t recognize them in street clothes, hanging out with the rest of you.

Thinking back, dining at the restaurant in our hotel probably would have been best. Leo DiCaprio goes there all the time and Daniel Day Lewis was in there when we were checking out. So… yeah.

The next day, our last day in Los Angeles, we headed for The Grove. What a fantastic place!! Of course it was a Saturday so it was super crowded. But what a great place to spend the day. They even have a giant farmer’s market there, where they celebrated mardi gras. It was a mass of people and crowds so that part was gross, but it’s a really nice place. I totally want to go back on a weekday.

So I think that’s really it… somewhere in there we visited a Target and Trader Joe’s. We went back to the hotel exhausted and worn down. Shawna packed; I rested. The next morning we checked out early, got some gossip from the girls at the front desk (”come on, we’re leaving now, we can’t go stalking anyone anyway…”), filled the van with gas before returning it, hung out at LAX until our flight left.

Once I got home I had high hopes that once I got back into my regular routine of more water and healthier food, proper rest etc., that I would start to feel better, but that never happened. I’m now over a month on my new eating plan, but I feel no different yet (and I don’t think I’ve lost weight, either! Hmph) but I’ll stick to it for awhile, I know it could take several months for my body to rebuild from proper nutrition. I’m waiting for a doctor down there to review my recent ultrasound results against my pre-procedure images and see what he has to say.

Pepper, my sweetie.

Pita crawled under the blanket I keep on the sofa to protect it from cat hair. Because she’s a smart ass.

i’m here to explain why i haven’t updated for months. also i’m still one handed on a macbook keyboard so the shift key to make caps is hard to reach so i’m still typing like this.

after two CCSVI treatments and loads of debt, i’m sad to say i am worse off than before. not because i don’t have CCSVI - i sure as hell do - but my veins are so screwed up that when they tried to fix things they actually made things worse. and because they don’t allow the treatment in this country, i can’t see anyone for follow up and fixing unless i pay to go somewhere again. it’s very frustrating and breaks my heart. all that hope, belief, effort and MONEY just to end up WORSE. i am very sad and have withdrawn a lot. my jugular veins are in worse shape now (i think the azygos was fixed up though, and i have a stent there. it should all be well) and totally collapse when i lay down, so i have NO blood flow when i’m in bed (as opposed to the little bit i had before) so it’s no wonder i wake up each morning stiffer, more spastic, worse vision… my bladder doesn’t empty ever and i think i’ve had about 4 infections in as many months and my mobility has gone downhill fast. i don’t even go for my little hallway walks anymore, it’s too hard. it’s all rather depressing.

since my life these days revolves around caregivers (i’m rarely alone), my bladder and my bowels, there isn’t much to talk about on here. “today i spent the day going back and forth from my lift chair to the commode, and watched TV” is not a very interesting blog post. but that is my life. i can’t even wear pants because it’s become too hard to pull them up and down with one hand. especially when you’re doing it sometimes every 20 minutes.

i tried the indwelling catheter thing. i hoped it would give me a little more freedom, to wear full clothing, go out, spend the evening in my power chair (which i need help getting in and out of) and boot around my apartment. but two good 24 hour attempts at that didn’t work out, my body totally rejected it and made everything worse (plus it caused painful bladder spasms and a hell of a lot of discomfort), so that plan was dropped. also with bag emptying, changing, cleaning and tubing everywhere it didn’t actually give me the kind of freedom and ease of life i’d hoped for. My doctor is very happy (he didn’t want that in the first place, infections galore, but he doesn’t live my shitty life!) and wrote an order for in and out cathing, which is making a huge difference but will take awhile to get set up. Caregiver training/supplies and all. But the few times I’ve tried it has allowed me to sleep for several hours straight or go an evening without needing to get up every half hour. The ability to empty your bladder is not to be taken for granted.

so, that’s why i haven’t updated. the reason i decided to now, is because i was inspired by a couple of things - oprah’s last show (THIS is my talk show, this is how i contribute, share, be heard… it’s my stage) and the facebook profile by a fellow MSer who calls herself a writer, and updates her blog daily, and only has use of ONE FINGER so what is my excuse, i have an entire hand! aside from the fact i am rarely alone and able to write, i do have some time (especially on weekends) to talk about whatever is on my mind. when i pull myself out of my pity-party funk i expect i’ll have other things to talk about.

i will talk about my trip to california soon. it really was fun, so much better than costa rica. we had a great time and i hope to go again someday. i will actually go for treatment #3 at some point, probably there again, when the doctors know more and can actually fix my veins for real. and when #2 is paid off… $8,000 to go. i actually worked hard, with a couple of friends, to put together this fantastic music compilation you can download to help raise some money. please pass the link around, 23 artists donated over 90 minutes of music! I have the greatest friends on earth:

SONGS FOR DONNA

I’m sad that The Good Lovelies were not able to contribute. They have been on tour constantly and probably didn’t have time to clear a song with their publisher and record label and all that. but aside from missing them, we got a great batch of artists. even Jeremy Fisher wanted to be involved!

next up i’m going to post about my excellent trip to CA, rob szabo’s overnight visit, my new ipod touch, my new food plan (it’s been a month of no dairy, sugar, eggs, gluten; daily kale smoothies and lots of green drinks) and lots more. i guess i do have a bit more going on than just peeing but some days that’s all it feels like.

*disclaimer* i’m still not doing caps because i’m one handed on a macbook and “shift/letter” is not often doable on this keyboard!

i have booked an appointment for Round 2 of angioplasty for CCSVI. i will say it now: i wish like hell i had waited and not spent all that freakin’ money to go to costa rica in july!! i really don’t believe they knew enough yet, and that entire experience has left a bad taste in my mouth. $18,000 later. i was definitely “undertreated” (as many of us “pioneers” were. no fault to the doctors, they just didn’t know better yet). not to mention they now have better accommodations and the transportation company is more organized and has more equipment. i did not have a good trip or experience there, to be honest. the hospital and care was fantastic, the people were lovely, but i had an awful trip and was mostly uncomfortable. when i just wanted to be grateful.

so, i’m going to try it again! this time i am going to a clinic in california where the doctors really know their stuff. i am very confident in this place, 100%. i know many people who have gone, too, and they’re all very happy. i am, once again, raising money to help fund this treatment and trip. can you believe we even have to leave the country and pay out of pocket for what would only cost our public health system about $1,500?? as opposed to the average $30,000/year, per MS patient?? it’s CRAZY.

Wendy said some good stuff during a recent meeting in Ontario:

i’m going here: Pacific Interventional

i have done my research, trust me! one thing i like about this place is that they are phlebologists (vein experts) and interventional radiologists and have been doing this stuff for YEARS. now they do about 20 ccsvi procedures/day, and the doctors are up on the latest of the latest techniques. i wish i could wait a year and go, when they know even MORE, but i can’t wait. i get worse every day i wait. (”time is brain”). i may need another treatment someday, but in the meantime i am confident further progression can be stopped by these doctors!!

my last ultrasound showed that my right jugular really needs to be ballooned (it wasn’t) and my left is “far from perfect”, although still better than it was. most of the subtle improvements i did feel are gone, some are still here, and my ms continues to progress as i’m able to walk less and less. i’m losing the feeling in my left foot/leg as well, which scares the shit out of me. so, i’m just doing what i feel i have to do to save my life.

If you can spare a few dollars, and I know most of if not all of you can, (skip your latte or brown bag it this week!), pleeeeease help me out. Fingers crossed by the time I need another angioplasty they’ll be doing it for MSers in Canada, but in the mean time… THIS IS HOW YOU CAN HELP. If you’re not a fan of online transactions you can EMAIL ME for my mailing address.

THANK YOU. AGAIN.

i’ll be doing other fundraising things in the near future that don’t just involve begging for money. watch this space!

Anyway, enough about all that. i haven’t even written since the new year! happy new year! seeing the polyjesters on new year’s eve was epic. they were fantastic, as always. sheldon, jason, and his wife karina opened a cafe in carstairs in january! that is now their full time jobs. i went for a visit opening week. it’s such a great little place, and they’ve got mom carol in there baking up a storm now! between her baking, the soups/sandwiches of the day, and the fantastic lattes, not to mention the best staff ever, it is THE place to be in carstairs. the cafe radio!

things are going well in the caregiver department. since hiring nancy and thalia, life is much better. i will cry if thalia moves!!! having her and her husband right upstairs is a godsend. her hubby has done so many little things around here that have made my life easier (he’s a woodworker) and they are SUCH a lovely couple. but they have a child and aren’t going to stay in this building long when you can rent an entire house for pretty much the same amount. and nancy is just wonderful… so positive all the time, she keeps me going. taking me out in her vehicle is awesome, too. how do you think i got to see the cafe in carstairs?! we also take regular trips to my chiropractor and my doctor. next week i’m going to get my hair done. so life is better, for sure, since i got the self-managed care going.

i’m lucky in that the way it works for me is that home care still sends me someone every morning for exercises, shower/dress, lunch etc. so i don’t have to worry about hiring someone to do that. i know nancy and thalia could handle it, but 7 days a week i MUST have that help, and it’s just easier that i not need to worry about it. the girls home care sends 6 days/week are great, but saturday is my day from HELL. i never know who is coming or what time, and i rarely see the same person twice, and they rarely understand english or have common sense. it’s a nightmare. i wish i could skip that day altogether and just sleep through it lol

today my home care told me she had trouble getting paid for one of her visits here because according to the office i had “cancelled that day”. wtf? luckily she was able to make them dig deeper by reminding them that i DON’T cancel unless i’m not even here. “she can’t shower, dress, or even get food without help, so why would she cancel?” really. shitty reminder of my situation, but whatever. maybe that will change soon… i’m trying not to get my hopes up too high after what happened last time, but it sure would be nice to not need so much care every day.

i am down to 3.0 mg of my sleeping pill/night! from 15 mg. sometimes 22.5 and i’d been known to take even 4 pills in one night (30 mg.) i am soooooo happy i am getting away from that drug!!!!!!!!!

i’ve got the grammy awards on in the background while typing this (i recorded it to watch whenever). justin bieber is on with jaden smith and they are cutting to will and jada. i can’t help but think how dj jazzy jeff’s children feel. (”gee, thanks dad”)

also, i like justin bieber. i’m not a fan of his music, but i really quite like him! he’s such a little gentleman and so bloody talented.

speaking of music, duran duran has a new album! and it’s fantastic!! and john taylor talked to me on facebook AND twitter. it only took 28 years for him to notice me, but it happened. that’s right. thank you, social networking.

so, i’m going to go now… let’s be honest, i probably won’t update until after i get back. unless i get into a big photo uploading mood, god knows i have a ton. but it will be an AWESOME update because i already know this trip is going to be so much better and way more fun than costa rica!!!

I need to update a lot more to make up for all the missed entries and scratch that item off my 101 list. Can it happen? I’m starting to think not, stuff has changed so much. But we’ll see.

I’ve been a little sad lately since I found out some people I knew from that care facility I stayed at earlier in the year passed away. One being Tom, who I mentioned a fair bit. I really liked him. Turns out he died about a week after I left! Mildred, the chattiest of the dementia ladies, also passed on. And others, but I didn’t ask about everyone because it was too depressing. That got me thinking about Elaine, my favourite roommate from the other care facility I stayed at when I broke my wrist, and a quick Google search showed me she died about a year ago. Sigh.

I’ve been frequenting the care facility, visiting Nick. He went into the hospital back in May for the surgery that was supposed to help him, but it just made him WORSE. He was in the hospital up until about a month ago! Now he is living with the permanent long term care residents at the care facility. Once I was able to hire Nancy, we went to see him at the hospital back in October (with a Peter’s Drive In burger and shake, which he was very happy to get!) and a couple times since then. The first time I didn’t know he had moved back into the care facility, so we went to the drive in, which is very close to the care centre, then drove all the way to the hospital, parked, went up… and found out he had left!! So we drove allllll the way back to the care centre and he got a cold burger and melty shake. But at least I know where he is now, and he’s a lot closer, so visiting is easier. He is not, sad to say, in very good shape. His paralysis is getting worse by the day and he rarely even goes on Facebook now, it’s so hard. I definitely have to feed him his burger (or pizza, when we went a couple weeks ago. I’m his supplier) as he can’t lift his arms and has very limited use of a few fingers on one hand, that’s it. He says his lungs and breathing will be next to go, and he doesn’t want to be kept alive by machines, so…

I’m going this week and bringing him Puffs with lotion. He constantly needs someone to wipe his nose with tissue, and the kleenix in those places is rough. And when you’re at meals, it’s the rough napkins that are used. His poor nose is so red and sore. Do you realize how many times a day you lift your hand to scratch/pick/wipe your nose, eyes, ears, etc.? Can you imagine not being able to? I think I have scratched my head/face at least 5 times while typing this paragraph. It would suck beyond belief to NOT BE ABLE TO!

By the way, Nick doesn’t really have anyone. I think I may have mentioned when I was staying there before that the only visitor he ever had was his dad, and he did his laundry for him and stuff. So imagine my shock when his dad died in September. His mom lives somewhere in the US and judging by the stuff she posts on his Facebook, she is in denial about how bad things are with her son, otherwise she’d get her butt up here and be with him!! It makes me so mad to think about it. Last time I saw him he told me he’d had such a rough time with breathing and needing to spend the day in bed that he didn’t expect to wake up the next morning.

I forgot to mention a very important event that happened between my last two entries… my friend Jason got married in September! For realz!

I sure hope they don’t mind me stealing that picture off Facebook.

I’m so happy for them and they are so happy! I need to talk to Jason about an available date for the Polyjesters to perform at a fundraiser for me in the new year. I’ve got a lot of money to raise to go for another procedure! Family and some friends really helped with Costa Rica, so I need to do some real fundraising for this next, and hopefully final, one. I’m going to see them on NYE but I probably won’t get to talk to them about that… it will be mayhem!

I started working on this entry a couple weeks ago, and with some fudging I have managed to make it look like I started it today. Typing on the Macbook is a headache with only one hand. no more caps, i’m sorry, it’s just too hard and takes too long. i can go about pretty quickly if i don’t use caps. faster than the frogpad! but i still want a new one. caps are important to me, i’m usually very anal about typos! new frogpads should be available in march or april. in the meantime i’ve got my eye on ebay for a lefty frogpad!

christmas. it’s a lot of work, isn’t it? i don’t think it’s worth it, in our family! christmas eve i went up to thalia’s and spent the evening with her, her hubby and daughter. lots of cheese, fruit, crackers and yummy food like that. no need for making a big turkey dinner, just lay out the stinky cheese!! i made them watch the polyjesters “are we there yet” dvd from 2002 (i think?) but they didn’t actually sit down until it was past the halfway mark. now they have to watch it again, and pay attention hehe

christmas day my dad picked me up and we drove out to my mom and bob’s, where my brother and his girlfriend were as well. lots of food and presents! i got the 4 in one printer/fax/copier/scanner i wanted plus a new little digital camera (which my mom still has so she can exchange it for the RED ONE) and a bunch of little stuff. my mom worked so hard on the house, the big dinner… i hope it’s the last time she does it! she wanted to give darren’s girlfriend a proper christmas turkey dinner because they don’t do that in mexico, but it is too much work for 10 minutes of chowing down! next year i hope it’s much simpler. stinky cheese and crackers and BAKING.

oh, the absolute BEST PRESENT IN THE WORLD that i ever received ever in my life, was emailed to me last week. a song. a song written for me, about me, by ROB SZABO. coolest. thing. ever. i’m going to figure out a way to upload/stream it so y’all can hear it!! it’s a REALLY good song! the fact it’s about ME is just a bonus. for me.

Found one! Click here to listen: Donna’s Tune

that was easy and painless! i loves the internets.

okay, health update: i’m still weaning off sleeping pills, and it’s going pretty good! i’m down to 6mg/night, which is less than one pill, and less than i’ve taken in countless years. considering i used to take a minimum of 2 pills and often 3, i am happy with my progress. another 12 weeks i guess, to total freedom! i do forget what it’s like to sleep straight through the night, and hope i get to experience it again someday.

i saw another physiotherapist last week and was given a few more exercises to do here at home. i tried going back to “living well with a chronic condition” classes, but it’s just not a good fit for me anymore. i need to work at home, both by myself and with one-on-one help from my home care. living well is group exercises and i’m not able to do them anymore. plus 10 minutes, 2x/week (”if it’s available”) on the machine i want to use is just not worth the travel and trouble. i need to commit to doing these exercises he gave me regularly!

any movement is difficult, my stiffness and spasticity seems to get worse daily. it’s very painful. getting out of bed in the morning is the worst! baclofen (medication for it) doesn’t help much, plus since it’s a muscle relaxer it weakens your muscles over time, so i REALLY want to take something else. all meds seem to have the same side effects. i take magnesium and serrapeptase as well plus of course i stretch daily but nothing seems to do a damn thing! i wish i could take baths.

fun stuff update: after my last entry i went to see peter katz with thalia, and of course it was fantastic. the following week nancy took me to see the good lovelies, which was also fabulous! sold out show, packed house. then rob szabo sends me a song, and on friday i get to see the polyjesters. so, musically, it has been a great end of the year! my public photo album for peter and the good lovelies (while the link lasts) is over here.

i’m going to put some photos up here later, but for now i just want to publish this because OMG I UPDATED!

I know it’s been awhile, and people want updates on my health since CCSVI treatment in Costa Rica. There is honestly nothing to tell… I read my last entry, almost 3 months ago, and it’s still pretty much the same! I know for sure that the symptom of painful spasms when I scratch is gone most of the time, as it hasn’t shown up much over the past month (just occasionally). So that’s something… but it’s not the 5 years of my life back I was hoping for! I was sooooo hoping I would go back in time and get some functions back. I went for a follow up Doppler last month, and he says I have “better” flow in my left jugular, but it’s not perfect. I have membranes in my veins causing blockages and “positional” stenosis that can only be fixed with stents. So I have some things to think about, a possible big fundraiser to organize and a trip to Arizona to consider if I can get the money… I am very confident about this Interventional Radiologist I have been talking to there, who has been working with veins for over 20 years. I really want to see her. I don’t think it’s Costa Rica’s fault I’m in this position, they have a great team down there but can only do so much, we are all still learning. I think I need something more specialized. And then what, who knows? It is so much more than just stenosed jugulars for many of us. All we can do is keep trying and hoping the neuros here loosen their grip and let the vascular profession study WTF is going on with our blood flow, veins, valves… and let us be fixed!

Tonight I am starting week 12 of 30 for tapering off sleeping pills (I decided I may as well go the 30 weeks and not rush it). Fingers crossed this works for me! Some nights I sleep better than others, but never as well as I’d like to. A few times I have caved and taken more than my tapering amount but I’m really trying not to! Last night was rough, but I would not let myself reach for another half a pill or anything. I’m down 6.0 mg/night from where I started, which is almost an entire pill (I used to take 2, sometimes 2.5 or even 3, some nights I was known to take 4). My prescription was 2 pills/night, so I’m doing really good now.

One thing I am really learning is if something is stressing me out and keeping my head spinning so I can’t stop thinking about it when I go to bed, I must DEAL WITH IT right away. I’ve resigned from being the Treasurer and webmaster/mailing list person for CCSVI Calgary. That was a full time job and it was making me crazy. Plus the President was driving me nuts and I don’t agree with how he does things, so I wanted my name removed from everything so I’m not associated with his screw ups!

Quitting that has been a huge relief and weight off my mind. So I have another job… being a boss! I’m finally on self-managed care. I was given a contract back in May for 30 hrs/week, but that was for all 7 days and was to include all personal care, exercises, meals, companion for outings, bedtime help, etc. etc. and I have been arguing with them about how that is not enough hours ever since. Well, to be honest, I didn’t think I’d need all that help after I got back from Costa Rica, so I really only started bitching about it in late July. I mean, one Handi Bus trip to the doctor and you’re looking at 5 hours easy, so I definitely needed more companion hours. After many phone calls, meetings, writing up my needs in detail, I finally got approved to keep my home care as is in the mornings 7 days/week (which is personal care, exercises, breakfast/lunch prep) and use the 30 hours/week contract to hire my own caregivers for supper/bedtime/companion care. That’s awesome! I’m so happy I don’t have to worry about hiring morning care, that’s the biggest job, and now I know someone will always be here, even on holidays. So I have hired a couple of fantastic ladies, one main one for outings and companion care, supper and occasional bedtimes, and another lady who lives right upstairs and can do suppers and bedtimes as well. She’s actually from New York City where she worked as a paramedic, and yes, she worked on 9/11. Well, she wasn’t scheduled to work, but of course she went to the hospital to see how she could help. Can you imagine… she lost a lot of friends that day.

They both started last month. They are GREAT, I totally lucked out with this! I’ve been able to do things like visit a friend in the hospital, go to my chiropractor regularly, shop at DIFFERENT malls and stores, and I’m starting exercise classes on the 30th. Next week I get to see Ghazi, the hairdresser I loved so much years back and haven’t been able to get to. I tracked him down (thanks, Facebook!) and made that appointment. A REAL CUT AND HIGHLIGHTS FROM A FANCY STYLIST! I can’t wait. It’s so nice to have a bit of a life again.

Although to be honest, this week sucks… Nancy, the lady I hired for afternoons, had to go down east suddenly for a week because her mother in law died (obviously these things can’t be planned). Gracie, my regular home care worker for mornings, had to leave suddenly to go back home to take care of her sister who has cancer (obviously, these things can’t be planned). It’s actually a good week for Nancy to be away because my home care has been scattered and LATE and it snowed so badly here everything/everyone is snowed in. I’m getting different home care every day again and it’s terrible (today was good, but she was a one time fill in). Who knows who’s coming tomorrow or what time or if she understands english/has common sense! This is why I’m so stressed and not sleeping this week! Gracie was also one of my back up caregivers for bedtimes, and my other back up is my friend Shawna who is in Hawaii, so with all those people away that leaves Thalia, the lady upstairs, to do suppers and bedtime until Nancy gets back. She can’t get sick!! Thank God she lives upstairs and can’t be deterred by weather and bad driving conditions.

Tonight we are going to see Peter Katz! Of course he brought a snow storm with him, as usual. Although he was here for a couple of days and we went for lunch (with Nancy and Thalia, her cute little girl and husband) on Nov. 2 and I didn’t even need a coat, so maybe it’s not 100% his fault.

I haven’t been updating my blog but I have been checking in on my 101 list and crossing things off. I think I’m doing well, and now that I have more help I’ll be able to get more accomplished

A couple more things I’ve been doing in the area of health and healing include Reiki and Body Talk. My friend Pam has her Advanced Reiki, and we decided to try regular sessions on me. This is pretty major, since she’s doing it for me as a friend, and the cost would normally be about $60 per session. I’ve had three so far, the weather ruined my chance yesterday as she was snowed in! I’m not noticing anything yet, as seems to be the way it is with me and energy medicine. I have something blocking me from allowing my body to heal, but it’s totally subconscious and hopefully with time we can break through it. Body Talk is possibly another way to get to the bottom of my health issues. I’ve had two sessions so far. My body talks a lot and tells her what’s wrong in certain areas and why, and it’s been accurate as far as I can tell, (in terms of where my pain is and weaknesses). My body also said it didn’t like the perfume in my deodorant (so I switched to unscented) and the filler the pharmacy uses in my sleeping pill capsules (they make them with the tapered amounts) so I got that changed, but who knows. None of the “tapping” techniques she uses to fix things has done a damn thing but constipate me terribly so I don’t think I’ll spend money on another session. We’ll see. I’ve added 2 Tbsp. of flax seed/day into my diet to deal with the constipation (it works!) and started taking Serrapeptase again at the urging of my friend Gail, who swears by the stuff. I’m hoping it will help with my unbearable stiffness everywhere, and pain in my hips and back.

Let’s see, what else… kitties are great, the vet saw them on Tuesday and they’re fine. Pita has made friends with Nancy and Thalia and although it took Pepper a few weeks to get used to their visits (she always hides from strangers, unless they are sent from the home care agency… she totally knows) she comes around now. It helps that they are good with the kitties! Thalia’s daughter is 19 months old and sooooo cute, and likes to come down and see Pita (and me, apparently she says my name a lot ). She has a stuffed cat that she has now named Pita.

My brother’s girlfriend painted me the most gorgeous sunflower painting ever! She is a fantastic artist. You can see her gallery here but I need to take a picture of my painting, which I would do right now while I’m thinking of it if my camera battery wasn’t across the room charging up for Peter’s show tonight.

Let me publish this before it ends up in my “drafts” for another month!!

Me and Peter when we went out for lunch on the 2nd

Pepper

Pita

Okay, I know, I’m a bad blogger with my inconsistent updates! My treatment didn’t give me back the use of my right hand or improved vision or any of that stuff (yet) that would make this blogging process easier.

I have good days and bad days with my fatigue. I think overall it is better than it was. It seems like before a symptom improves it goes back and forth for awhile and then it stays gone. Like the being able to scratch an itch on my right side without going into major painful spasms. I thought it was a sure thing, then it came back, then went away, came back… now it has been about a week so I think I can safely say it’s gone and I can scratch! So maybe the fatigue will be gone for good soon. My brother’s girlfriend commented today that my eyes definitely look better, like they are in focus. That hasn’t reached my brain yet, but I hope it will! And my bladder… fingers crossed that will improve, too. Today is a pretty good day with that so perhaps it’s starting.

My body has been deprived of proper blood flow for soooooo long. I need to keep reminding myself that this will not happen overnight. But it’s hard when you see your friends jumping up and down 24 hours after their treatments even when they have had MS as long as you. Or handwriting again. Or using a fork. Sigh… we are all different blah blah blah I know.

I owe you an entry all about my trip to Costa Rica. I’m not sure I’ll actually get around to it, there’s too much to type about! Maybe I’ll do a bulleted version at some point. Right now I just want to do an update to show off my new award:

Which I think they just sent to every MS blog they could find, because they told me my “readers voted” but who actually reads this? LOL That’s why I took out their link. If I ever find out it’s the real deal and people voted I’ll give them credit. Until then, they are spam, but I’ll display the badge! Not sure how to put things on my side bar permanently with a Wordpress template.

I am taking a huge step forward with my health. I figured, I spent (well, my family and some dear friends) a fortune going to Costa Rica for a medical procedure that may have saved my life, so what’s the harm in spending more for some other help I really need. I am going off sleeping pills! I am going to end this 8+ year addiction once and for all and end this vicious cycle I have been on for years. You know… the pills don’t work anymore so I need more and I barely sleep anyway but I’m so addicted I can’t even fall asleep in the first place without them… it’s been rough. And the side effects of sleeping pills are surely making my MS symptoms worse than they would be (double vision! Blurry vision! Dizziness! Balance issues! Etc.!) So I was searching for answers and stumbled upon Point of Return and after thoroughly reading through their site I decided to go for it. The fact their lead physician has progressive MS and has managed to keep it in check with nutrition didn’t hurt, either. Before I even received my package I filled out a big questionnaire and then received a lovely personal response from the founder who gave me some great advice and hope. Reading her story in the book they send you made me cry! Although I am not on as many pills as she was (antidepressants, sleep meds, anti-anxiety, pain, you name it) I totally identified with her and the way she described how the pills take over your life and change your personality and the core of who you are. I just bawled and bawled and now believe there is hope for me, too. I am on day 9 of my pre-tapering nutritional build up and will begin tapering next weekend. My doctor wrote a prescription for the compound pharmacy to taper me 5% a week for 20 weeks. They called and told me that made for odd amounts so they would taper me 1/2 mg/week which I agreed to, but now I realize that is 30 weeks instead of 20 so I need to call them on Monday. I don’t want this to take longer than it has to (plus the products are expensive and you need to stay on them while tapering, it’s part of the program and I’m not doing this half way!)

One thing the founder asked me to do is try to cut back on the Ibuprofen I take because that interferes with sleep. I take an extra strength ibuprofen every night at bedtime, and often another one or two throughout the night, because of my hip pain and basic aches and pains my body gets from just not being able to move properly. Been doing that for years. My friend Beth, who used to be a nurse, was here (first time we had hung out in over 20 years, thanks Facebook!) and I asked “what am I supposed to take, if not ibuprofen? It’s the only thing that seems to help…” and she said “Willow Bark. It’s an anti-inflammatory”. And I was all… huh? You can buy willow bark at the health food store so the next day I found some, and have NOT TAKEN AN IBUPROFEN SINCE. It’s amazing! It really works! For headaches, menstrual pain, and all my hip and body pains. I only take 2 at bedtime and don’t need a repeat during the night. Amazing!

Another thing I’ve had to quit is my 5-HTP and calcium supplements. There’s a whole list of things I need to avoid while tapering off sleeping pills, including bananas! Oh, the doctor in Kuwait who is doing all the CCSVI research (Kuwait is one country that has approved the procedure for ALL MS patients to get right away) is swearing up and down that “I am 100% sure that overloaded Calcium is the main reason tor MS- CCSVI . And 72 other diseases”. He suggests stopping calcium and even Vit. D because it is a calcium retainer. “So keep taking Magnesium and B6 till all MS syndromes disappear.” Hm. Interesting. I know of a woman who, after tons of research and reading papers by a “world expert on the entire architecture of the motor neurons in the central nervous system” started taking calcium channel blockers and her MS is in remission. I Know two woman with MS who swear by large doses of B6. So there may be something to all this! No more calcium supplements for me and I better get me some vitamin B6.

In the meantime, I am taking my glutathione and Omega 3 to build up my system so it can handle the Big Sleeping Pill Taper of 2010™ .

I will leave you with this:

This man must be Calgary’s next Mayor.
Click photo for more info!